William T. O’Donohue, Lorraine T. Benuto and Lauren Woodward Tolle (eds.)Handbook of Adolescent Health Psychology201310.1007/978-1-4614-6633-8_24© Springer Science+Business Media New York 2013
Treatment Adherence in Adolescence
(1)
Department of Psychology, University of California, 900 University Ave, Riverside, CA 92521, USA
Abstract
Treatment nonadherence involves the failure to follow medical recommendations and to maintain behavioral commitment to disease management. Among adolescents, nonadherence can significantly limit treatment outcomes and potentially endanger health status. Successful adherence to (or compliance with) both acute and chronic care regimens tends to be lower among adolescents than among both adults and younger children. This chapter examines the challenges of treatment adherence in the care of adolescents, as well as emerging research and clinical efforts to enhance adolescent commitment to their self-care. Provider–patient communication, patient motivation, and both barriers to and supports of adolescent behavioral self-management are considered. Family issues and the role of parents and peers in the transition to adolescent control and responsibility for illness management are also examined. Validated interventions to improve adolescent adherence are reviewed, and recommendations for future research are offered.
Treatment Adherence in Adolescence
Quality health care outcomes depend upon patients’ adherence to a variety of treatments including medication, medical device use, and lifestyle management such as diet and exercise. Adherence refers to the degree to which an individual follows disease management activities as directed by their health professional. The empirical study of adherence now spans more than 50 years in the scientific literatures of psychology, medicine, and public health. Nonadherence has been found to be a pervasive threat to health and well-being and imposes an appreciable economic burden estimated at 290–300 billion dollars per year (DiMatteo, 2004a; New England Healthcare Institute, 2010). More than 240 million medical visits per year are wasted due to nonadherence (Haskard-Zolnierek & DiMatteo, 2009) and both providers and patients often remain unaware that a major cause of poor health outcomes is poor adherence (DiMatteo, Haskard-Zolnierek, & Martin, 2012).
While adherence behavior is not itself a health outcome, adherence is significantly related to both acute and chronic disease outcomes. Meta-analysis shows substantial and statistically significant outcome differences (26 %) between high and low adherence in all disease realms. Among pediatric (including adolescent) patients, adherence is significantly more strongly related to health outcomes than it is for adults. The difference in risk of a poor health outcome is 33 % greater with poor adherence than with good adherence in samples of children and adolescents; for adults, this risk difference is only 23 % (z = 2.64, p < 0.01) (DiMatteo, Giordani, Lepper, & Croghan, 2002).
Adolescent Nonadherence
The challenges of treatment adherence have been studied extensively in adult populations, but less so in child and adolescent care. In a meta-analysis of 569 empirical studies of adherence spanning the history of adherence research to that time, DiMatteo (2004a) found four times as many studies of adult populations (18 and older) as pediatric, and only a portion of the pediatric studies involved only adolescents. Since 2004, the corpus of studies of adolescent adherence has grown appreciably, however, with a recent search producing over 900 empirical research references, 162 of which were published in the year 2010 alone.
Adolescent nonadherence typically takes a number of forms. Although parents are likely to be in charge of filling/refilling medication prescriptions, scheduling medical appointments, and transporting the patient to treatment, adolescents themselves are likely to be expected to take responsibility for various health actions including testing blood sugar levels, taking insulin injections, following a prescribed diet or avoiding proscribed foods (e.g., those containing gluten), doing specific exercises for a sports injury, and following a daily asthma treatment regimen to avoid a breathing crisis.
The prevalence of nonadherence across a wide variety of diseases, regimens, and patient populations averages 25 %, although in some disease conditions such as the complex management of diabetes, nonadherence can be 50 % or more. In meta-analytic work with stable estimates, there is a significant trend for (401) studies of adults to yield higher adherence (76.8 %) than (116) studies of pediatric patients (70.6 %) (t(515) = 2.84, p = 0.005). Among adult patients, there is no relationship between age and adherence (83 studies, r = 0.01, d = 0.02), but among pediatric patients (41 studies, r = −0.06, d = −0.12) adherence is lower among adolescents than it is among children (p < 0.10) (DiMatteo 2004a).
Treatment nonadherence in pediatric populations is estimated, in further studies, to be about 50–55 % (Rapoff, 1999); among children with asthma followed in a specialist clinic, medication adherence was about 70 % (Phelan, 1984). Based on structured interviews and daily phone diaries, more than 50 % of adolescents with cystic fibrosis reported doing less than their prescribed airway clearance regimen and 30 % indicated that they were not doing any of their prescribed regimens (DiGirolmo, Quittner, Ackerman, & Stevens, 1997). In a study of prescription medication adherence among adolescents, complete adherence to the prescription was only 36.2 % (Chappuy, Treluyer, Faesch, Giraud, & Cheron, 2009). Between 50 and 60 % of children and adolescents with adherence problems were found to underuse their prescribed medication (while less than 10 % overused it) (Chmelik & Doughty, 1994; Coutts, Gibson, & Paton, 1992). Among adolescent patients with adequate functional health literacy, 35.7 % were categorized as adherent, but only 23.5 % of those with marginal/inadequate health literacy were categorized as adherent (Murphy et al., 2010). Twenty-five percent of adolescents with type 1 diabetes reported mismanagement behaviors such as missing insulin shots (Kovacs, Goldston, Obrosky, & Iyengar, 1992; Weissberg-Benchell et al., 1995). In asthma treatment, the average overall adherence rate among African-American adolescents (measured as daily mean percent of prescribed inhaler puffs) was only 31.5 %. Adherence also decreased over time, from 42 % at the start of the study to only 20.2 % of prescribed puffs after a year on treatment (Rohan et al., 2010).
Simmons, Logan, Chastain, and Cerullo (2010) found variability in adherence as a function of the treatment regimen. Among adolescents who were recommended a medication change, 53.1 % were fully adherent; 87.5 % were fully adherent to obtaining additional recommended tests. Of participants prescribed physical therapy, 100 % were fully adherent to continuing if they had already started, but only 75 % began; 90.9 % were fully adherent to use of a TENS unit, but only 60 % were fully adherent to an independent exercise program. Adherence to psychological recommendations varied as well: 85.7 % of adolescents were fully adherent to continuing treatment with their current therapist; but only 46.7 % were fully adherent to beginning cognitive behavioral therapy (Simmons et al., 2010).
Understanding Treatment Adherence in Adolescent Patients
The empirical literature on treatment adherence in all age groups has documented a wide variety of factors that influence the degree to which patients follow medical recommendations. Researchers have offered empirical evidence for the contribution of dozens of intra- and interpersonal, environmental, disease-related, and regimen-related factors. Practical applications of this research are somewhat limited, however, because there are so many causes of nonadherence. It is critical to understand these causes in a workable conceptual framework in order to design successful programs to advance adherence among adolescents. DiMatteo et al. (2012) describe the Information, Motivation, Strategy (IMS) model which distills the findings of the complex literature into three main elements for understanding adherence. According to the IMS model, patients of all ages are non-adherent for three straightforward classes of reasons: (1) They do not understand what they are supposed to do (e.g., information transmittal and gathering are lacking; they have not participated in the decision-making process; their communication and rapport with their health professionals is limited), (2) they are not motivated to follow their treatment (e.g., they do not believe that the benefits outweigh the costs; their social network and/or cultural environment do not support the behavior), and (3) they do not have a workable strategy for following the treatment (e.g., they do not have help; practical barriers stand in the way). In the following section of this chapter, we examine the specific challenges in treatment of chronic illness among adolescents in the context of this model, attempting to understand three categories of factors related to adolescent nonadherence. We also examine the effectiveness of adherence-enhancing interventions in the context of this model.
Information
The communication of information between health professionals and their patients is a primary element essential for the achievement of treatment adherence; patients cannot follow treatments they do not fully understand. Communication is essential for a realistic assessment of patients’ knowledge and understanding of their regimen, and communication is essential for building trust in the therapeutic relationship. In a recent meta-analysis, the relationship between physician–patient communication and treatment adherence was found to be higher (borderline significant) in pediatric practice (average r = 0.24) than in the care of adult patients (average r = 0.18) (t(101) = 1.75, p = 0.08). Further, training to improve physician communication showed significantly more improvement in patient adherence when pediatricians were trained (average effect size r = 0.27) than when non-pediatricians were trained (average effect size r = 0.10) (t(19) = 3.42, p = 0.003) (Haskard-Zolnierek & DiMatteo, 2009).
At the most basic level, recall of recommendations is essential, although studies have shown the majority of adults (e.g., Kravitz et al., 1993) as well as children and their parents (Ievers et al., 1999; Lewis, Pantell, & Sharp, 1991) fail to recall what they are told about disease management during their medical visits. Patients and caregivers need the opportunity to ask questions and have them answered, to clarify information they are given, and to “teach back” to their health professionals what they have learned. All patients, including adolescents, need the chance to participate in the decision process and to determine how they will follow their treatment (Golin, DiMatteo, & Gelberg, 1996). When patients and their doctors share similar beliefs about patient participation (that is, when patients are motivated to participate and their physicians allow them to do so), patient outcomes tend to be more positive and patients are more satisfied (Jahng, Martin, Golin, & DiMatteo, 2005). Patients are also more adherent to physicians who answer their questions (DiMatteo et al., 1993) and patients are typically willing to follow treatment recommendations only for health professionals they trust and who provide satisfactory interpersonal quality of care (Sherbourne, Hays, Ordway, DiMatteo, & Kravitz, 1992).
Whether patients understand and can follow their treatment is related strongly to their health literacy, which has been found to be a major factor among HIV-infected adolescents (of whom almost 15 % were found to have inadequate or marginal health literacy). Among the 85 % of participants with adequate functional health literacy, only 36 % were categorized as adherent, and among those with marginal or inadequate health literacy, only 23.5 % were categorized as adherent (Murphy et al., 2010). Adjusting for age and education level, viral load, and self-efficacy to adhere to medication regimens, however, adolescents’ own health literacy was not significantly associated with their medication adherence (Murphy et al., 2010). But, as Janisse, Naar-King, and Ellis (2010) found among high-risk adolescents with IDDM, parental literacy/reading comprehension was significantly related to treatment adherence among adolescents on an intensive insulin regimen (Janisse et al., 2010). Parents with low health literacy struggled to help their children adhere to increasingly complex diabetes treatment regimens, leading the authors to suggest that families may benefit from more intensive diabetes education or different approaches to teaching diabetes management skills (Janisse et al., 2010).
Essential elements of improving communication involve strengthening physician–family interactions and the relationship between the adolescent and health professionals; the goal is to help understand the adolescent as well as the disease (Drotar, 2009; Simmons et al., 2010). Drotar (2009) studied both parents’ and children’s perceptions of their pediatricians’ behavior in the management of pediatric chronic illness treatment management, and correlated the providers’ communication behavior with treatment adherence. The findings showed that discrepancies between the needs of parents and their children, and inconsistencies in physicians’ behavior while explaining treatment procedures, were related to limitations in the children’s adherence to treatment. Further, understanding and implementing complex treatments, such as for diabetes, can be challenging to even the most motivated parents and their adolescents (Rudy, Murphy, Harris, Muenz, & Ellen, 2009).
Motivation
Probably more than in any other age group, adherence among adolescents is affected by issues of motivation. The motivations of the adolescents themselves as well as of their parents, siblings, and peers can have strong effects on commitment to a treatment regimen, and ultimately on its fulfillment (Wysocki, Greco, & Buckloh, 2003). Motivation for treatment adherence is built upon a number of factors (DiMatteo et al., 2012). These include the following: (1) belief in the treatment (the necessity of it, and its value), (2) the perceived costs of the treatment (particularly in terms of potential losses of social status, cultural norm maintenance, and peer acceptance), and (3) attitudes about the illness (i.e., its meaning) and treatment (i.e., expectations that the benefits outweigh any costs) and about the self in relation to disease management (self-efficacy). Beliefs, attitudes, motivations, and their resultant commitment to treatment may be particularly difficult to achieve for an adolescent patient, because he or she is embedded within a social system comprised of influential family members as well as peers who may not support the regimen (or with whom the adolescent is resistant to share the issues of care). Further, adult caregivers and parents may struggle to bridge the differences in attitudes and beliefs between the adolescent and all of the adults with whom they deal.
Models of health behavior and general behavior change (e.g., the Health Belief Model, the Theory of Planned Behavior) (Martin, Haskard-Zolnierek, & DiMatteo, 2010) posit beliefs and attitudes as the building blocks of commitment to action. Commitment requires belief in potentially negative and serious consequences of not acting, the expectation that the benefits of acting will outweigh the costs (broadly defined) of doing so, a synchrony between the beliefs and desires of the individual and his or her social (including cultural) environment, as well as the individual’s belief in his or her own ability to act (i.e., self-efficacy). These models suggest that, clinically, it is vital to know the patient well, and to identify and manage realistic treatment goals and expectations for therapy. In the case of adolescent care, it is also vital to know the adult caregivers. Understanding what patients and their parents/guardians expect and believe, what they are influenced by, and what they can be inspired or prompted to do allows for health professionals to support adolescent motivation to adhere to treatment.
Chronic illness management can challenge the self-esteem of some adolescents (Friedman et al., 1986), who may become frustrated and view themselves as “defective” because of their illness; such feelings can potentially contribute to significant emotional distress (Rudy et al., 2009). Adolescents may view their illness and treatment regimens as forcing an unwanted dependence on their parents, guardians, and health professionals (Rudy et al., 2009). Sometimes, in an attempt to understand the full meaning and implications of their condition, adolescents might stop taking their medications as an experiment to determine the effect on their health or well-being. Not all medications produce immediate results, however, so their benefits may not be at all obvious; and the health consequences of not following treatment might also be delayed (e.g., celiac disease, cystic fibrosis). Some consequences might not be noticed at all, or might not be clearly connected to nonadherence. Distal future outcomes might be ignored completely, because adolescents are likely to have some difficulty with focused commitment to the future (Ingerski, Baldassano, Denson, & Hommel, 2010). The belief that treatment is not necessary to their current interests and goals may severely limit some adolescents’ commitment to disease management (Ingerski et al., 2010).
For many adolescent patients, the perceived stigma of being ill is one of the major factors limiting active adherence to treatment (Wysocki et al., 2003). The developmental period of adolescence is one in which the struggle to “fit in” and to be accepted by peers is a primary concern. The everyday management of a chronic disease (such as with blood sugar testing and insulin injections by the diabetic, or the avoidance of popular foods such as pizza by the patient with celiac disease) can be a source of embarrassment and “differentness” leading the adolescent to avoid social stigma by avoiding the treatment regimen (Friedman et al., 1986; Salamon, Hains, Fleischman, Davies, & Kichler, 2010). Some adolescents may even have difficulty with management of their disease within certain social contexts because of direct peer pressure and actually being singled out for criticism because of their condition (Wysocki et al., 2003).
The sociocultural norms of adolescence (including expectations that adolescents have for each other regarding dress, activities, and behavior) may carry a great deal of weight in an adolescent patient’s decisions about health action and treatment adherence (Hampson, Glasgow, & Toobert, 1990). These cultural norms can affect responses to treatment plans as well as perceptions of the meaning of illness and the sick role, and the acceptability of seeking and accepting advice from adult caregivers (Hampson et al., 1990; La Greca, Bearman, & Moore, 2002). For adolescents, friends and peer group members may be the strongest influences in their lives and in their commitment to care (La Greca et al., 2002). Thus, culture not only refers to racial and ethnic identification but extends to the broader adolescent culture, underscoring the need for health professionals who work with adolescent patients to fully understand adolescent culture (both broadly and regionally), perhaps working with psychologists who are experts in adolescent treatment (Christian & D’Auria, 1997). Providers should identify the important individuals and influences in the adolescent’s life, and examine their understanding of, beliefs about, and influences on the patient’s treatment and adherence (La Greca et al., 2002; Thomas, Peterson, & Goldstein, 1997). Concerns about norms and adolescent culture should be discussed with the patient and his or her caregivers in an effort to increase awareness of the factors that can affect the success of medical recommendations (Christian & D’Auria, 1997).
Adolescents with chronic disease can face daily challenges of social pressure, especially when their medical condition makes them appear different from their friends (Christian & D’Auria, 1997; La Greca & Hanna as cited in La Greca et al., 2002). For the diabetic, for example, the complexities of dietary adherence and invasive activities such as blood glucose testing and insulin injection are potentially significant issues that can derail adherence (Thomas et al., 1997). Promoting patient adherence requires health professionals to determine the degree to which their adolescent patients feel their disease affects their friendships, and to try to find ways to deal with these challenges (La Greca et al., 2002).
Although the findings are mixed, some research suggests that by being generally supportive (though not necessarily helping directly with treatment), peers can help to motivate adolescents to be adherent to chronic disease management. In a review by La Greca et al. (2002), data suggested that adolescents perceive the support of their friends to be more important in certain areas (e.g., meals and exercise) than in other areas of management (e.g., insulin injections and blood testing). Friends may also be helpful with emotional reactions. Bearman and La Greca (2002), however, did find that friend support, although not related to overall treatment adherence, was related to higher adherence for blood glucose testing. These findings argue for the importance of identifying the specific areas of disease management in which friends can be most supportive, and facilitating that support with education and encouragement. Providers should respectfully address patients’ beliefs (including their concerns about the role of peers), and should serve as both partners and persuaders, working together with adolescent patients to arrive at mutually agreed-upon courses of action and using the strength of the therapeutic relationship to facilitate the adolescent’s commitment to the treatment regimen. Identification of the “stage of change” at which the adolescent is approaching the treatment, and working with the patients’ beliefs, attitudes, subjective norms, and cultural context, providers can help the patient to develop and maintain a commitment to long-term disease management (Prochaska, DiClemente, & Norcross, 1992).
Strategy
Even with a full understanding of the disease and treatment, strongly held commitment, the best of intentions, and supportive norms, individuals may still fail to adhere to necessary health behaviors because they encounter practical difficulties. Patients can only do what they are capable of doing within their resource limitations; those resources can range from affordable treatments to organized and supportive families to well-developed habits. Thus, the third element of achieving adherence involves identifying the barriers that adolescent patients face in following their treatment and assisting them to gain the necessary resources and supports to solve their strategic challenges.
Practical Barriers
Practical barriers can represent some of the most common challenges to patient adherence. At the simplest level, a medication’s bad taste has been found to limit adherence among children and early adolescents (Ingerski et al., 2010). Economic challenges may limit the affordability of treatment (Rohan et al., 2010) and combined, with other pressures such as difficult parental work schedules, can result in parents’ failures to obtain on-time refills of medications. In a study of adolescents with inflammatory bowel disease who were taking oral medications, the most commonly reported barriers included forgetting (87.8 %), being away from home (47.3 %), interference with an activity (44.6 %), refusal/defiance (17.6 %), not feeling well (16.2 %), and running out of the medication (16.2 %). Intensive treatments (such as for HIV, diabetes, CF) may be quite demanding and difficult for adolescents and families to manage (Ingerski et al., 2010). Orban et al. (2010) found that the most frequent stressors reported by adolescents receiving treatment for HIV were related to medication-taking (Orban et al., 2010), even despite the availability of clinic support services for adhering. These services, however, tended to focus more on tangible aspects of adherence such as medication reminders; in fact, some efforts such as passive coping strategies made youth feel helpless and frustrated, increasing depression and reducing adherence (Orban et al., 2010).
Treatments for chronic disease interfere with the lives of adolescents in major ways. Medication schedules can disrupt normal routines and both school and after-school schedules. Dosage frequency influences adherence to prescriptions, with more frequent dosing resulting in lower adherence; average adherence was 73 % for once daily regimens, 70 % for twice daily, 52 % for thrice daily, and 42 % for four times a day regimens (Chappuy et al., 2009). Researchers have found that adherence to complex and intrusive treatments such as dietary modification, glucose monitoring, and physical therapy is even lower than adherence to medical regimens in adolescents (Rapoff, 1999). Length of treatment also influences adherence. In one study with children treated for pneumococcal infection, adherence was significantly better for shorter therapy of 5 days than for the longer therapy of 10 days (Schrag et al., 2001). Of course, long-term chronic disease management is likely to produce even lower adherence (World Health Organization, 2003).
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